Family Caregiving Summit@

NYAMApril 30, 2014

Robin Fenley, PhD, LCSWNYC Department for the Aging

rfenley@aging.nyc.gov

For another person, do you…?

Pay bills Shop for groceries Pick up prescriptions Set up medications Prepare meals Provide transportation Do laundry

Accompany to MD Help someone

Dress Bathe Eat Toilet Transfer

Coordinate care

> 65 million informal caregivers of persons 18+ 1.4 million in NYC (2010 BRFS Report) 65+ expected to double to 70 million by 2030

Provide 80% of help required over course of illness

NAC/AARP, 2009

Initial hurdles

Self identification as caregiver

Reluctance to accept caregiver role 43% of NAC/AARP (2009) respondents felt

they had no choice in taking on caregiver role

Role changes

Competing demands Personal life Family life Professional life

Caring for aging relatives AND Kids, siblings, friends, partners

Multiple stressors can increase risk for depression & for abuse

Gender(F= 66%; M= 34%)

Typical Caregiver

49 year old married female, employed, with young kids caring for her 69 year old mom

NAC/AARP, 2009

Caregivers Work

On average, care is provided for more than 20 hrs/week for almost 5 years (4.6) Women: ~22 hrs/wk Men: 17 hrs/wk

57% of respondent caregivers were employed 46% F/T; 11% P/T

73% worked at some point in caregiving career

NAC/AARP, 2009

…with 70%..

Rearrange work schedule Decrease hours at work Take unpaid leave Frequent absences from job Forego promotions Resign/retire early

NAC/AARP, 2009

Unseen Caregiving Populations

UndocumentedLimited or non-English speakingGrandparentsLGBTDisabledMentally illYoung caregivers

Long-Distance Caregiving

Accurate assessment of need Extent of self-care

Finding resources Putting them in place Providing oversight Affordability

Guilt over absence, old family matters

Caregivers & Service Usage

Only 10% to 20% of family caregivers use formal services

About one-half of primary caregivers provide care without outside help (friends, neighbors)

First Steps

Learn about the illness/diagnosisDiscuss healthcare wishes & financing the

caresBroaden circle of care to other family

members & close friendsIdentify appropriate community servicesFind support

Caregiving doesn’t have to be a negative experience Increased sense of fulfillment Self-esteem Spiritual growth Mastery Renewal of commitment

Most Requested Services

TransportationInformation on financial assistanceRespite careTechnology

PERS Telemed Record tracking/organizer Sensors

• Falls, stoves, wandering

NAC/AARP 2009

Resources - National Centers for Medicare & Medicaid Services

www.cms.gov

Compare drug & health plans Medicare basics

www.medicare.gov

Compare nursing home ratings

www.medicare.gov/NHCompare

Compare Medicare-funded home health agencies (CHHA’s)www.medicare.gov/HomeHealthCompare

Family Caregiver Alliancewww.caregiver.org

Nat’l Alliance for Caregivingwww.caregiving.org

Nat’l Academy of Elder Law Attorneys, Inc.www.naela.org

Nat’l Assoc of Professional Geriatric Care Managerswww.caremanager.org

The Eldercare Locatorwww.eldercare.gov800.677.1116

Resources - NYS Dept of Health

www.health.ny.gov Medicaid MLTCs

Partnership for LTC www.nyspltc.org Combines LTC insurance &

M’caid extended coverage NH, HC, ALPs

Office on Agingwww.aging.ny.gov Senior Helpline: 800.342.9871

Office of Temporary & Disability Assistance

www.otda.ny.gov Assistance with cash,

heating, food, SSD/SSI claims; refugee & immigrant assistance

Resources – City Dept for the Aging

www.nyc.gov/aging Nat’l Family Caregiver Support Program311

Human Resources Administrationwww.nyc.gov/hraInfo Line: 718.557.1399

Alzheimer's AssociationNYC Chapterwww.alz.org/nyc646.744.2900

Health Information Tool for Empowerment (HITE) www.hitesite.org

Directory of health & social services for low-income, uninsured & underinsured (NY)